Gavin’s Day #8 ~ Riley Trip

Last Wednesday, we went to Riley for an appointment with Dr. Haggstrom.  On the way there, we stopped at Teppanyaki for lunch.  Gavin has started asking to go there every time we go to Riley.  We can’t go every time, but we try to make it our special thing.
We made it to the appointment just in time.  After talking with a few residents and Dr. H, we decided it was time to go ahead with the compression sock.  Gavin is having more pain in his leg and will time himself out from activities that are physically exhausting (playground, outside play, walking at zoo, etc.).  Dr. H prescribed a sock that will cover his entire foot and right leg up to his thigh.  The goal is for him to wear it all day and only take it off for bed, bath, swimming, etc.  Dr. H was very honest with us that kids his age struggle with them and don’t like them.  She said this is going to be a lifelong battle and to not make it World War 3.  Based on how well he does with the sock, she may prescribe a low dose of aspirin to help with blood clot prevention. 
In our experience with Gavin, if we just tell him it has to be, he will do it.  We may have a few issues at first, but Brian and I have decided to just make it part of his life now.  He is so young, he probably won’t remember life without it!  Before we left Dr. H’s office, a different resident asked if she could come in and feel Gavin’s leg and look at it.  We are often reminded how rare he is.  We always knew he was special though!
When we left Riley, we went straight to Hanger Clinic to get fitted for his sock.  We called the lady to see how to get there and she said she would fit us in because we were out of town.  Gavin’s sock has to be custom made.  The guy measured him and we picked the color and fabric.  There weren’t many colors to choose from, so we went with the caramel color.  It will hopefully hide the most dirt!  The guy picked a thicker fabric that will be more forgiving for a three year old to wear.  He also added some extra elastic at the top to help keep it up on his thigh.  He told me we will be able to hand wash it. 
We asked the guy how often he will need a new sock, and he said approximately every 3 months.  He will have to get remeasured and then a new sock ordered.  As for the cost….each sock, for one leg costs a little over $800!  Insurance may or may not cover it.  The lady said that with his diagnosis, they won’t.  She said she would change the word and have Dr. H sign off on it.  If they don’t cover it, we agreed to pay $409.  That would be every 3 months!!  Fingers crossed they cover the sock and we don’t have to pay that much.  Brian and I are reminded more and more how much money Gavin’s medical expenses require. 
We will pick up his sock when we go to our next Riley appointment on August 20th.  Our ride home was uneventful.  We go back to see Dr. H in January.  After we get the first sock and see how much insurance does or doesn’t pay, we are going to look in Evansville to see if we can find a place to make them here that may be more convenient and cheaper.